Why Am I So Tired? A Primer on Breast Cancer and Fatigue

About seven months ago, I started dealing with a serious health crisis that wasn’t cancer. Three of the disks in my neck were bulging and compressing my spinal cord, leaving me with neuropathy in both hands, weakness everywhere, decreased balance and coordination, and increased muscle pain and spasms. I couldn’t hold small objects or feel my patients’ pulses. I couldn’t carry my work bag over my shoulder by the strap. I had to start using a cane to walk. Because I’m a physical therapist, I knew that if I didn’t do something soon, I would not be able to continue performing my job. In April, I had surgery to remove the three bulging disks and to stabilize those three levels in my neck with hardware and bone graft material. I was out of work for nine weeks altogether, and recently returned, feeling very fortunate that I was able to do so.

Naturally, I thought of my last serious health crisis, which was breast cancer. Next month, it will have been nine years since I was told my biopsy was positive. My neck surgery was a lot more brutal than my partial mastectomy, and a lot harder to recover from. But I didn’t have to endure radiation and Tamoxifen after it. I was exhausted and miserable after neck surgery, but I couldn’t help noticing that ultimately, I felt better than I did before my symptoms started. I certainly cannot say the same about cancer. I still remember what I dynamo I was back then before I was diagnosed, and how, nine years later, I have not fully shaken the effects of the fatigue that moved in and never entirely left me. But I have learned a lot about it, and yes, I do feel a lot better than I did when it started. A lot better. So, it seemed like a good time to write about it once again.

I don’t have a magic spell to offer you about how to make fatigue disappear. But I can tell you a few really good things. Since I first started trying to figure it out back in 2008, the chronic, long-term, body-slamming fatigue that results from cancer and cancer treatment has been formally recognized and given a nice, logical name — cancer-related fatigue, or CRF. There has been a great deal of research on it, verifying its existence, its prevalence, and its biomarkers, and studying various treatments for it. Assessment tools have been developed for it, so that doctors can officially evaluate and diagnose it. And it has even been given its own ICD10 code so that insurances will pay for treating it. One thing that has not changed is that it still happens. Without a doubt, CRF has been one of the most onerous, long-lasting consequences of cancer and cancer treatment for me personally, and for many, many other cancer patients. So, here’s an updated primer that may help.

What is this and why is it happening to me?

As soon as you hear that you have breast cancer, or almost any kind of cancer, your body starts reacting to the awful news. You may feel shock and disbelief. You may have dozens of questions. Your life starts to include a flurry of diagnostic tests and doctor visits. You have to find babysitters, take time out of work, deal with insurance claims, figure out if you can afford co-pays. Your body goes into high-stress mode. Stress has an immediate effect on your emotions, as well as wreaking havoc on the neurotransmitters and hormones that manage your state of mind, your sleep, and your energy. Most likely, your immune system has already been attempting to deal with the cancer cells in your body, long before you are aware of it, and now it has to deal with the physical consequences of uncomfortable tests and biopsies. Your concentration can be adversely affected, and you may find that you are too tired and frantic to deal with ordinary household tasks. And this is just the beginning. Before you even contemplate surgery, radiation, or chemotherapy, you may feel exhausted.

Each step of the treatment path for breast cancer can add to your fatigue. Surgery is often the first step, and depending on your tumor and the options you choose, may involve more than one type of surgery, and more than one protracted period of recovery. If you opt for radiation, it is usually scheduled within weeks of your initial surgery, and can require daily treatment sessions over several weeks. Chemotherapy, by infusion or by oral medications, may require months or even years to receive. If you are diagnosed with de novo metastatic breast cancer, your treatment will never end.

The side effects of each of these treatments can take a huge toll on your stamina. Meanwhile, your life is turned upside down. You may have to miss a lot of work, or not be able to work at all. Your bank account may shrink drastically, and you may need help from others who may not be used to providing care. Is it any wonder that, along with scars, treatment side effects, and anxiety, so many of us develop overwhelming and long-lasting fatigue?

According to a 2013 article, originally published in Brain, Behavior, and Immunity, “Fatigue is one of the most common and distressing side effects of cancer and its treatment, and may persist for years after treatment completion in otherwise healthy survivors.” It has been estimated that from one quarter to nearly all cancer patients experience fatigue during and after treatment. We may be warned about fatigue beforehand, but often these warnings do not begin to encompass the totality of its effect on us and our quality of life.

What is cancer-related fatigue?

Cancer-related fatigue (CRF) is a condition that researchers are still trying to understand. It is not simple tiredness that can be fixed by an extra nap or two. CRF is a persistent, whole-body exhaustion that you can’t ignore. You may sleep for hours every day, yet not feel refreshed or energized by that sleep. You may find it hard to concentrate or to engage in your usual activities. Although in itself, CRF is not the same as depression, you may also find that it affects your mood, as you struggle with or are unable to do the things you want or need to do.

Although CRF exists as a separate issue, there are a number of other physical and psychological factors that may contribute to fatigue. These need to be addressed separately. They include pain; nausea and diarrhea that can lead to dehydration; poor thyroid function; lowered red or white blood cell counts; menopausal symptoms brought on by surgery or chemotherapy; fever and infections; nutritional imbalance; anxiety and depression; and the sedating side effects of medications for pain or anxiety. The decreased activity brought about by fatigue can also make it worse.

A thorough evaluation of your symptoms should be done. This may be carried out by your oncologist or by your primary care physician. And don’t let your doctors brush you off with the usual bromides that you’ll be fine with more rest and more exercise. You need a proper assessment. One of the problems that cancer patients can encounter when trying to get help is that their doctors don’t really know how to assess them for this kind of fatigue. I had to dig up my own information and ultimately find a research study nearby that was able to assess my fatigue and help me get treatment for it. If need be, don’t hesitate to refer your doctor to this link at the National Cancer Institute website that describes CRF in detail, as well as how to assess and treat it.

A number of survey tools have been developed and researched to assess CRF. One of them, called the Fatigue Symptom Inventory, has been found to be consistently reliable. It is a survey that you fill out yourself, and may fill out again from time to time, to see if your symptoms are improving. It can be found and downloaded at this link: Fatigue Symptom Inventory. Don’t be shy about providing your doctor with a copy of it for your chart.

What can I do about CRF?

Before you can address CRF specifically, you need to be treated for any of the other medical issues your doctor may identify when you are evaluated. For example, if you are anemic, you may need to take nutritional supplements like iron or get advice about how to improve your diet to build up your red blood cells. Some cancer patients may need specific medications or even a blood transfusion, and their blood levels will need to be monitored.

Sometimes fatigue is confused with depression. It’s important, therefore, to be evaluated to distinguish between the two. You may experience one or the other, or both at once. But they are not the same. Depression is a mood disorder that usually includes feelings of despair or hopelessness, apathy or lethargy, a desire to isolate yourself, and an inability to feel pleasure in activities that you usually enjoy. Depression can be relieved with medications that help improve the levels of neurotransmitters effecting your state of mind. You may need treatment for depression before you can adequately deal with your fatigue. A link to a previous post about depression and cancer is here: Depression and Cancer: An Insider’s View

Once you have addressed any contributing medical issues, there are a number of strategies that you can try to help your fatigue. Learning to prioritize the things you need to do, and to map out a reasonable schedule, can make life more manageable. It’s hard to ask for help, but this is the time to do it. If your friends or family members ask you to call them if you need something, see if you can make a list of things that need doing, and give them a task. Oncology counselors and nurse navigators, or local cancer support groups, can help you identify sources of help, often at no cost, to get things done. You may need others to babysit, take care of your pets, do the grocery shopping and prepare meals, clean your house, or mow the lawn. If you are able to work, you may be able to do some of your job at home. You may also be able to arrange for shorter work hours. It may be hard just to organize all this, so ask someone to help you with that, too.

Cancer patients are often advised about getting exercise. Exercise can help relieve fatigue, but doing it may seem like an impossible task when you have CRF. As a physical therapist, I try to give my cancer patients various options that address differing levels of energy, from short movement routines that they can perform lying down, to carefully progressive walking routines. Sometimes, you will feel like you can barely get out of bed. It’s often not helpful to be given a complicated routine that you cannot easily complete on your own. The best exercise advice is to keep it simple. Even if all you can do is to walk around your house or down your driveway for five minutes, that will help. Some cancer patients find it useful to join an exercise group for cancer patients at a local gym or to practice yoga. You can try out different activities to see what works for you. Keep in mind, however, that many of your daily activities can also provide some exercise. Tasks like sweeping the floor or doing your laundry involve exertion and weight-bearing that can keep you moving. Make sure you keep periods of exertion short, and get at least some brief, quiet rest afterward. Your doctor may be able to refer you to a rehab therapist for help and advice. You may find a few suggestions here to help get you started: Exercise After Cancer When You Don’t Feel Like It

If you still find it hard to get CRF out of your way, you may want to ask your doctor about neurostimulant medications. Many cancer patients are able to take medications like Provigil, Nuvigil or Dexedrine to help their concentration and energy last longer. For more details about CRF and its treatment, you can refer to the complete PDQ on Cancer-Related Fatigue provided by the National Cancer Institute. The section on Psychostimulants will tell you more about these medications. I found Provigil very helpful for getting through my work day. I also found time-released Wellbutrin, aka Buproprion, an older, dopamine-facilitating anti-depressant, to be helpful, and still take it sometimes as needed. It has its own link in the PDQ.

Most of all, remember that if you have CRF that lasts for months or even years, you’re not crazy or abnormal, and you’re not alone. If you need some validation, just type “fatigue” in the search box on my sidebar, and you’ll find the fifty-eight other posts I’ve written about it. Here’s a link to one, prompted by an article headlined, “Breast Cancer Fatigue is Real,” that also has several other links to helpful information: Could Have Told You That.

Here are a few other research links you may find helpful:
1) I’m So Tired: Biological and Genetic Mechanisms of Cancer-related Fatigue
2) Inflammation and cancer-related fatigue: Mechanisms, contributing factors, and treatment implications


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Paws and Purrs: How to Be Loved by a Cat

Fiona

Fiona

Yes, They Make Their Own Decisions

It goes without saying that admiring her incomparable beauty is the first step toward getting any cat to love you. Next, you might try some respectful adoration. And it’s advisable to bear in mind at all times that cats are not dogs. One hesitates to make generalizations about any species, but cats are not slavishly motivated to please you, as dogs often are. They don’t necessarily like to ride in cars or fetch your slippers. A lot of cats don’t even like to be picked up and hugged. When they choose to love you, they do, in their own way. But they don’t, as a rule, jump up to greet you and lick your face. There are exceptions, of course. Once, when I visited my friend who runs the local animal shelter, I ended up adopting a cat who, upon my opening his crate to say hello, stood up on his hind legs, put his front paws around my neck, and licked my face. I wasn’t planning to adopt a cat just then, but what choice did I have after such a greeting? However, that is another story for another post.

This post is about Fiona. I first met Fiona in 2009, about a year after I had been diagnosed with breast cancer. At the time, Fiona was eight years old, and was, I was told, a dilute, or muted, tortoiseshell, something I never knew existed. She lived with a neighbor who had herself recently been diagnosed with breast cancer. My neighbor was already disabled and was trying to simplify her rather chaotic home. She had three small dogs who were adorable, but not particularly well-behaved or nice to cats. She also had three cats, who had established a strict pecking order, with poor Fiona at the bottom. Between the yappy, aggressive dogs who chased her, and the other two cats who bullied her, Fiona was a very frightened, unhappy girl who spent most of her time hiding in a small storage room. My neighbor had a heart of gold, but not necessarily the wisdom to realize that she ought perhaps to have stopped adopting pets at one of each. She did, however, realize that Fiona was miserable and asked me if I would adopt her. At the time, I had one cat, a shy, inoffensive black Persian male named Jett, and Foxy, a gentle, old, Nordic mix dog who happened to love cats. So, I agreed to take Fiona home.

Fiona emerges from under the bed.

The first thing I did was to let poor Fiona have her own room until she felt equal to meeting any new animals. She spent the first several hours of that first day hiding under the guest room bed, but by the afternoon, she began to emerge when I visited her. It took a few days for her to brave the rest of the house, but when she did, she soon discovered that Jett only wanted a mother substitute for my cat Chloe, who’d fulfilled that role until she died earlier that year. And Foxy was savvy enough to keep his distance, and approach gradually, until Fiona realized he wouldn’t bark at her or chase her.

Within weeks, Fiona was relaxed and happy. Her amazingly soft fur was even fluffier, and she now slept with the rest of us on the bed at night. She and Jett would usually bracket me while I slept, with Foxy at the foot of the bed, facing the door as he always did at night to guard us against potential marauders. Eventually, Fiona even snuggled up with Foxy for the odd nap.

Five weeks after Fiona moved in, I ended up adopting another cat, a gray and white tail-less Manx named Teddy, who was twice as big as Fiona and Jett. It wasn’t the best timing ever, but I’d promised another friend that, if she ended up having to live in a nursing home, I would take Teddy in. Well, she did, and I did. I was worried about how Fiona would react, but she clearly felt she had the upper hand, since she was there first. Poor Teddy, on the other hand, had never lived with any other animals before, so he won the guest room for a while until he learned that it was not acceptable to boss around the other cats, and that it wasn’t entirely horrifying to live with a dog. It all worked out. After all, I was the human, it was my house, and my rules. Everyone got loved, and I didn’t put up with any nonsense. If Teddy needed any further convincing, Fiona flipped all twenty pounds of him on his back one day right into the water dish when he got a bit rambunctious. He behaved himself after that.

Shy little Jett preferred to sit beside me, but not on my lap. Teddy liked to be picked up and hugged when I came home, but mostly, he liked to lie on his back, displaying his white tummy in hopes that someone, anyone, would rub it. Fiona became my lap cat. She hated being picked up, but if I left her to her own advances, she would hop into my lap or onto the table whenever I was using a computer. Thus, she appointed herself my blogging assistant. A close-up from this photo became my Gravatar icon, and shows up whenever I comment on a blog. Indeed, she became an all-around champion snuggler, attaching herself to some part of my body when I was sleeping, reading, having my morning coffee, or checking my email. She had a particularly endearing habit of draping herself on my arm in bed, and tucking her face into my hand. My Facebook friends have seen ample evidence over the years of her snuggling talents. Here are a few illustrative photos.


Change Happens

Early in 2010, sweet little Jett died of an abscessed tooth combined with old age. Later that year, in November, I had to make the awful choice to let Foxy go, after watching him suffer with advancing arthritis, increasingly painful mobility, and confusion caused by dementia. A few years later, Teddy succumbed to feline infectious peritonitis. It was heartbreaking to lose each one of them, but it helped that I still had a fur baby or two to comfort me after each loss.

I was worried that Fiona would now be lonely at home while I was out at work, but she rose to the occasion and reveled in having me all to herself. She began to talk more, in her slightly raspy, expressive voice. She had never been very sociable when humans came to visit, but now she became Miss Congeniality, greeting friends and contractors alike. She was particularly fond of my electrician. I did finally realize that she missed her big, fluffy cuddle-buddy Foxy, when she took to sleeping on the guest room bed during the day, curled up with a toy horsie who was about Foxy’s size. Still, she was happy, healthy, and gracefully approaching her old age. Until she wasn’t.

The first crisis occurred a few years ago, when she developed hyperthyroidism, a common ailment in older cats. After fiddling with oral medication for a year, I had her treated with radioactive iodine in August of 2015. It worked. No more pills, and she was once again robust. A year later, she started to have a few brief bouts of vomiting, nausea, and diarrhea, but they cleared up in a day or two. Until they didn’t anymore. A few weeks ago, she began having these episodes every other day. Her regular vet was maddeningly passive. Fiona was not getting better, she was not getting enough nutrition, and she was becoming dehydrated. I got the vet to order full labs and an abdominal ultrasound, all with inconclusive results. Not once did the vet offer relief for Fiona’s symptoms, until I insisted on it. Finally, I’d had enough, found another, much better vet, and took Fiona to see him this past Tuesday. We came up with a provisional diagnosis and a treatment plan. If I wanted further diagnostics, he suggested I take her to the specialty emergency vet hospital. I decided I’d see how she responded to treatment and go from there. Later that day, she became exhausted and weak, and by nightfall, she developed labored breathing. I was scared now. I drove through the pouring rain at nine o’clock that night to the emergency hospital. The vet on duty was kind, persistent, and worked hard to assess her as quickly as he could, with a minimum of misery to Fiona, to come up with some answers. The answers he arrived at were that she had extensive cancer of the small intestine and sepsis. He did say that surgery was possible, but given her current weakened state, I felt it would be risky and that she had suffered enough. He agreed. At 11:30 p.m. on Tuesday night, he gave her the appropriate injections, and Fiona died while I kissed her forehead.

I can’t begin to describe how shattered I have felt this week. I have not been without at least one pet since 1981, and usually, I’ve had two or three. The house is so empty, so still. Sometimes, I imagine I hear little paws pattering on the floor or seem to feel the pressure of four feet landing on the bed to keep me company. I never can seem to get warm enough at night, no matter how many blankets I pile on or how high I turn up the thermostat. For thirty-six years, there has always been a furry face or three waiting to greet me at my door when I came home. I grieve mightily for sweet Fiona, but also for every pet I’ve lost. I’ve never set out to adopt any of the strays or rescued pets I’ve loved. They’ve always appeared, on their own, or at the instigation of someone else, when they needed me. Eventually, I am sure that another will arrive when I’m ready. But for now, I need to sit with this enormous grief that I know is just the flipside of the enormous love that all these fur babies have shown me over the years. People who think that animals do not love are fools.

So, I feel heartsick and blessed at the same time. I will admit that I often prefer animals to humans, but the outpouring of concern and affection I’ve received from so many friends, in person and on social media, has touched me and given me much comfort. More than that, it is a needed balm at a time when many of us are flabbergasted and concerned about our present political climate. It’s a reminder, when I very much need one, that there is still decency in this world. Thank you all for the love, and not only just this week, but over the years. And especially, I thank those of you who’ve loved Fiona, too.

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Turn and Face the Strange: Coping in the New Year


Changes

Was 2016 really as bad as we thought? It was a hell of a year. Just looking back at the cultural icons who died, the first massive shockwave for many of us was the death of David Bowie on January 10th. While we were still reeling from that, four days later, actor Alan Rickman died. Both were 69. And four days after that, Glenn Frye, co-founder of the Eagles, died at age 67. And that was just the beginning.

I am 62. These three artists not only contributed greatly to the music and films I’ve admired and enjoyed, but they were my peers in age, members of my generation. Their creative output spoke to how I felt about life, often helping me understand it. Meanwhile, I’m still getting used to the notion that I’m in my sixties. I don’t feel old, but I don’t feel young. I figure I’ll probably be around for a while. But who knows? Maybe not. The death of three peers in eight days tends to shake you up.

Of course, we all know how this continued. Some of the folks we lost in 2016 at least got to live to their eighties or nineties. Some, like Prince and George Michael, didn’t even make it to their sixties. And, in a two-fisted gut-punch, Carrie Fisher died at age 60 on December 27th, and her mother, Debbie Reynolds, died at age 84 the next day. You could be forgiven for thinking that 2016 was apparently bent on cutting a cruel, irreparable swath through our cultural lives.

So, yes, 2016 was just as sucky as we all thought it was. And that’s not even mentioning my more personal losses. Or politics.

Because I am 62, and have a long memory, and pay attention, I have for decades been reading and listening to news about the putative winner of our presidential election. And I must admit I’ve always thought he was a self-serving vulgarian. I have long been aware of his questionable business practices, his misogyny, his prejudices, his colossal bankruptcies, his shafting of thousands of contractors by not paying them for their work, the myriad lawsuits filed against him, his unfaithfulness to his former wives, his divorces, his execrable taste in interior design. He did nothing to change my opinion during the campaign. Indeed, he brought new meaning to the definition of cynicism. And apparently that cynicism was shared by enough of our fellow citizens to have gotten him elected. Or perhaps folks just weren’t paying attention to his history all these years. It’s an understatement to say I’m disappointed, but I can’t say I’m entirely surprised. The issue now is figuring out how to cope and what to do.

The Butterfly Effect

The day after the election, I was on a plane, flying to a conference whose purpose was to begin to thrash out some practical ways to help people with metastatic breast cancer deal with the collateral damage of living with the disease and its treatment. It was the perfect distraction and antidote to how I was feeling. Spending two days surrounded by a few dozen intelligent, passionate, articulate clinicians and advocates restored a lot of my faith in humanity. It was also a rare treat for me to take time off from work and spend a few days on the West Coast. I don’t get limitless time off, and I can rarely afford to travel whenever I want to every conference I’m interested in, so I appreciated this opportunity. When I got home, I napped, unpacked, and went back to my patients on Monday. At least I get paid to help people. That privilege has been especially helpful to my sanity these past several weeks, while I’ve tried to process the ramifications of this election.

Most of us can’t just quit our jobs and become full-time activists. But we can view all this as a wake-up call to learn more about how our government works and how to become perhaps better and more active citizens. There is a lot of information out there to help you figure out how to make your concerns heard. I have contacted my representatives on issues that matter to me, and have heard back from them. I’ve signed a few petitions, written emails, made phone calls and contributions to non-profits, subscribed to a few reasonably reliable media sources. If you wish the election turned out differently, here’s a link, from Patti Mulligan, with resources to help you figure out what you can do if you want to do something.

Mostly though, the challenge for many of us is how to get from one day to the next. And that’s where butterflies come in. The Butterfly Effect is the concept that even small actions can start a process that creates large changes down the road. It was initially coined in the realm of weather science. In popular culture, it’s come to be used by many to assert that there is a reason or an explanation for everything, but that is not it’s original meaning. Nor do I believe there is a reason for everything, because sometimes shit happens, like cancer for instance, and we don’t know why. Hence chaos theory. But in my own daily life, I interpret it to mean that every small act of kindness, consciousness, or goodness can make a small change for good in the world, at least for a moment. And that those acts can influence others to do likewise. And if we live our lives that way, deliberately acting from our best selves, those small changes can add up to bigger ones. So, it matters that you treat everyone with respect and kindness, even if you don’t like them, or agree with them. It also matters that you treat yourself with kindness and respect, and that may mean not permitting people to treat you like crap. Or permitting them to treat others like crap. Acting from your best self doesn’t mean being a doormat.

Of course, I’m a physical therapist, so I have to believe in the power of small, incremental actions. I have to believe that if my patients do a few simple exercises every day, they’ll eventually walk better. And, indeed, that is what happens, over and over. And I have to advocate for them when the healthcare system isn’t giving them something they need. Think about all the times when someone thanks you unexpectedly, or does something extra for you, how good it makes you feel. It can be something simple, like having the cashier at the store recognize you, smile, and ask how you are. It all matters. Most of the time, when you just smile at someone, you get a smile back. Smiles can be contagious. Kindness is contagious. Advocacy is contagious. That’s what I’ve experienced at least.

Sometimes I fail at this. I’m only human. I get frustrated at bad drivers like anyone else. It’s okay to feel frustrated. It’s even okay to curse. But we can choose not to then cut off the next person at the next intersection. We can feel and verbalize our frustrations, but we can choose not to take them out on someone else. We can pick our battles, and let go of the tangles we can’t fix.

It’s not easy. The world we humans have made is full of pain and misery and violence and hatred. But the people we have lost this year demonstrated that it is also full of art and music and talent and humor and goodness. And that those things may not fix everything, but they matter. We have to believe that they matter, and never let anyone talk us out of that belief.

I leave you with some perspective from David Bowie, from his song, Changes:

I watch the ripples change their size
But never leave the stream
Of warm impermanence
So the days float through my eyes
But still the days seem the same
And these children that you spit on
As they try to change their worlds
Are immune to your consultations
They’re quite aware of what they’re goin’ through
Ch-ch-ch-ch-changes
Turn and face the strange
Ch-ch-changes
Don’t tell them to grow up and out of it

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Metastatic Breast Cancer: Helping Us Help You


For two days at the end of next week, I will be attending a brain-storming conference to discuss ways to help mitigate the collateral damage experienced by people with metastatic breast cancer. This discussion will include patient advocates who have MBC, and patient advocates who have had non-metastatic breast cancer and are clinicians who treat cancer patients in our practices. As many of you already know, I belong to the latter category.

Some months ago, the Dr. Susan Love Research Foundation launched the Metastatic Breast Cancer Collateral Damage Project [MBCCD Project]. Initially, the project began by developing a survey to gather information about collateral damage from those who live with it. Then, clinicians like myself, who have had breast cancer and who treat patients with breast cancer, were asked to step forward and volunteer to help. Recently, the survey study was conducted, inviting people with MBC to describe the impact of MBC on their lives and provide details of all the types of collateral damage it has caused. A Health of Women (HOW) Study™ questionnaire was used to document this damage. Once the survey results were collected, DSLRF arranged for the conference I described above, and I was invited to participate.

Based on the survey results, an agenda has been drawn up to help guide those of us who will attend the conference. We will be meeting to review everything that has been shared by survey participants, and to work on developing concrete recommendations to improve the quality of life for people living with MBC. The goal is to come up with specific recommendations, based on our personal and clinical experience, and to share them widely.

I work as a physical therapist. Oncology rehab was one of my clinical internships in grad school. I have worked in many settings over the past twenty-five years, but for over a decade now, I have worked for a visiting nurse agency affiliated with a local hospital and healthcare system, providing physical therapy treatment in patients’ homes. I help all kinds of patients with all kinds of problems that often extend beyond the scope of physical therapy. That’s how it is in homecare. Both nurses and physical therapists serve as case managers for patients, which means that we need to ensure that our patients get help with all of their needs — medical, pharmacological, emotional, and financial. We do this by knowing when to bring in other clinicians who have specific expertise and by advocating for our patients with their physicians. We also have a palliative care team to help cancer patients and others with serious illnesses to manage pain and collateral damage of all kinds. I’m very lucky that I get to help advocate for and assist patients in such concrete ways. Believe me, when you treat someone in her home, you really see the impact that cancer has on a person’s energy, daily life, family, and finances in a way you cannot in any other setting. Having been a breast cancer patient myself really helps, too. Consequently, I feel that I have a lot to contribute to this next phase of the MBCCD Project. And, incidentally, I am looking forward to meeting folks in person whom I’ve only known in cyberspace, like Lori, who blogs at Regrounding. A wonderful perk!

I can tell you truly that the most important thing I do to be a good clinician, and a good friend, for that matter, is to listen. So, thank you to all those who completed the MBCCD survey. Thank you to my friends with MBC who have shared so many of their personal struggles with me and trusted me for advice, support and friendship. Thank you to my amazing patients who have taught me much more than I’ve taught them. And thank you to my blog readers. I want to invite anyone who reads this now to help me, to help us help you, by commenting here on the blog or on social media, by emailing me at kk@accidentalamazon.com, or by messaging me on Facebook or Twitter. The more we know and understand, the more and better help we can provide. I’m listening.

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